Cruel and Unusual Punishment

This one is going to be hard. Hard to write. Hard to read. Maybe hard to process. But, it is what it is. It is reality. It is what is happening right here and right now. And right now I’m in Costa Rica for a week, just here, just being with what has transpired and what is unfolding in the here and now.

I always knew that there would be pain that arrives with this cancer. It had been described to me as a constant dull pain in the bones, always present in the background. I have been so fortunate that for the first three years after my diagnosis I’ve been pretty much pain free. But in the past year or so the pain has arrived. Most noticeably last December when I entered the experimental trial and was injected with testosterone. Within 24 hours, all of the areas where the cancer resides in my bones, flared up and produced pain. Big-time pain. I was instantly aware of where the cancer was in my skeletal system. A three week course of steroids fixed the pain problem, until the next injection. Followed by another round of steroids to relieve the pain. I bowed out of the trial in March.

Since then I’ve had that dull achy pain in my shoulder blades, shoulders, clavicle and sternum. It wasn’t too bad. My hips and femurs sometimes have a flare up, most recently about three weeks ago. I was able to procure another three week course of steroids which almost immediately relieves the pain.

I am on various medications, all of which come with side effects. Consequences. Steroids for instance can cause cataracts. I just had a referral for cataract surgery and plan to have both eyes done next month. It feels like I’m putting brand new LED headlights on an old car that’s not going to pass the next inspection. Another one of the medications causes joint pain. Over the past two months I’ve developed what I describe as severe arthritic joint pain in the knuckles of my hands. Not good for a guitar and bass player. There is pain in my knee joints that is present if I try to draw my knees into my chest. Most days I am no longer able to get up and down off the floor, although I did do it twice last week.

About five weeks ago I began experiencing pain in my right shoulder that has limited my mobility with my right arm. I was convinced that it was something I did at the gym with a kettlebell. I did two PT sessions which were helpful with gaining more mobility but the arm is not what it used to be. I do the PT exercises every day. When I swat at a bug flying around my head using my right arm, it instantly aggravates my shoulder. It feels like someone is using a nail gun on my shoulder. Good news is the pain only lasts for about ten seconds. The lost mobility in the right arm limits my ability to get dressed by myself. And to properly shower. And sometimes to care for myself after using the bathroom. So I’m getting a bidet next week. Recently I feel my left shoulder losing a little mobility. And I am no longer able to sit cross-legged.

About two weeks ago I had a consult with pain/palliative care at DFCI. Right about that time I felt a little back pain coming on. Palliative care provided me with Oxycodone, Baclofen and Celebrex. I took the Oxy for about 10 days and did not feel any relief, so I’ve stopped that. All it does is constipate me. And I hate constipation. Since I’ve arrived in Costa Rica a week ago the pain in the lower back seems to flare up in the late afternoon and evening. It’s a stabbing pain. Sometimes like a debilitating electric shock that lasts for one second at a time. I head to bed with two Tylenol and two Baclofen and lie flat, just being with the pain. Just using my practice to remain aware, focus on the pain, understanding the impermanence of the pain and the physical body. Remaining still, within minutes I am usually able to feel some relief, and am able sleep through the night.

My time in Costa Rica has been great. I feel OK during the day but don’t really do much other than stay present with this body, this disease, this pain. My meditation practice has shifted from formal twenty and thirty minute sittings to hours-long sessions of stillness with awareness of body, breath, pain, impermanence, feelings and more.

That’s all I have for now. Live your life to the fullest. I hope to be able to share more of my journey moving forward. Peace. David